Crappy wake up call!

Why is it the only time I have wafer breaches/blow outs is while I'm sleeping!? Months at a time will go by with no problem at all, and then I hit a stretch where every other bag or so ends up in a leak many days before I would normally change....ugh! Yet again, I woke up early this morning after having only been asleep for less than 2 hours, and soon realize my tummy is wet....oh joy! So begins the adventure of removing a messy bag/wafer, prepping supplies and attempting a change while Pepe is being quite active. Once that is done, I leave the bathroom in a shambles and lay back down to try and get a few more hours sleep, but that is restless at best. See, my stoma shrinks way down low when I lay down, so I hate laying right after a bag change because I know any output is going to get right there where wafer meets stoma. I'd rather be able to give everything time to seal up better, but since it's 4 in the morning and I have to be awake soon, I roll the dice and try to sleep.

Ok....sorry....I guess this post was really just a vent, because nobody else understands what it's like to deal with this stuff. Don't get me wrong, all in all I am very happy with my ileostomy and have very few complaints. I just wish I could get to the bottom of why I have these ongoing night time leak issues. It is very hot here, and I've been quite active. Yesterday was an intense core workout, so maybe I loosened the seal with twisting and turning? Maybe the contours of my stomach have changed or I'm just unlucky?

If anyone has any suggestions at all, I'm all ears. Right now I use a 2 piece Convatec system with a convex insert and a Hollister Adapt Barrier ring. At night I wear a high output bag to help keep the pressure from gas building up so much that it aids in loosening my wafer, and to keep from getting up to empty too often. I am quite thin, but have a bit of definition to my stomach muscles. The skin on the bottom side of my stoma is dipped down further than the rest, but that is not "typically" where I have problems with the leaks. Might I just have to accept this as my one, big ostomy problem?

UCwhat....I'm sorry to hear about your leak. Haven't had one yet, so can't offer any advice, just sympathy! I'm sure I'm due for one soon!

Can you tell me more about what you're doing to strengthen your core? I've just started working out again and I'm extra cautious because I'm so afraid of getting a hernia. What are you doing, and are you wearing a belt?

Thanks, and I hope you get a good nights sleep tonight!

Thanks for all the responses! I would love to get this mystery solved and not have the night time leak worry always looming...

@Eva Lou~I think output pancaking around the stoma is a possibility for sure, but it's hard to tell exactly what goes wrong since by the time I wake up it's just a big mess! I do know that my output can often be thick enough to get stuck though...and I also sleep on my side in hopes that will help somewhat. I think a big part of the problem is that my stoma shrinks A LOT when I lay down, which is why I use the convex inserts. It gets to where it is almost flush with my skin, so at that point when output comes out it is right up against where the stoma and wafer meet, which I'm sure wears it down more quickly. I have both Brava strips and Sure Seals, and while they don't stop leaks, both have done very well at least containing leaks in the past. Problem is, my skin isn't very fond of either product, so I only use them on rare occasions. I wonder if I could just wear them at night and then remove in the morning without also peeling my wafer off. Hmmmm??

@Caren~ A lot of the exercises I do are just standard stuff....different variations of crunches, planks, oblique twists...and other bodyweight exercises like lunges/squats etc...that use the core along with other muscle groups. My GO TO website for workout programs is Fitness Blender. I've used them to east back into exercising after 2 surgeries and to get in better shape before my last surgery. You can do all videos for free, or pay a very small fee to get pre planned workout programs. I really like the low impact program after my last surgery and plan on buying the core program next. I too worry about hernias, and eventhough I DO have a hernia prevention belt, I'm pretty dumb about not wearing it all the time. I really need to get better about that. That said, I do pretty intense cardio, intervals, body weight and even dumbbell work up to 30 pounds at a time...and so far so good!

@Sunny~ Was the turtleneck a special kind of wafer, or something she put on in addition to your wafer? I would be curious to see how it works...I wonder if my stoma would get stuck inside something like that when it shrinks down, or if it might help keep output from getting in between the seal when it DOES shrink. Heck, maybe that's not even my problem! Do the Convatec wafers you use have the convexity built right in? For mine I have to use an insert and wonder if I might be better off with ones that are truly convex on their own. I hope you are doing well!

Yeah, that's the thing....the Sure Seals and Brava strips both irritate my skin a bit, and it gets worse the longer I wear them. But...they do a good job of keeping a leak contained so that it's at least easier to deal with. I just don't know if it's worth the skin irritation to wear them all the time...and I find them uncomfortable.

I have thought about whether or not a slight stoma revision would help, but part of me is nervous to mess with something that works so well most of the time. My stoma is actually as long as yours is when he's not being shy, he just seems to like to wiggle around a lot! I have mentioned it to my surgeon, and she said all the movement is normal. Maybe if I made it more clear that it's causing a problem she would be willing to discuss possible solutions.

Wow, Christine! A bag blowing out from the seams sure would be a mess. All of my leaks have been out from under the wafer itself. I have used a couple different Coloplast bags in the past and had mixed feelings about them...but I'm not sure if I tried the Sensura. Since I've had a leak with every brand I've tried, I'm pretty sure the problem is just me! I do know that if I do try another option, they have to come in and convex and offer a high output bag that I can wear at night. Gonna go look at what Coloplast has to offer now. Thanks!

Yes, Blueglass, my stoma recesses A LOT when I am laying down....pretty much completely flat. Sometimes it takes a few minutes, but it always works it's way back out once I'm up and around. Actually, it is quite long (inch and a half or so) most of the time! Glad to hear the convex wafer helped with your leaks...what brand/model are you using? The wafer that agrees with me most doesn't come in a convex option, which is why I just use convex inserts. More convexity would probably be great for my situation, I'm just not sure how to accomplish that. I did order a Coloplast Sesnura w/convexity sample...but haven't had a lot of luck with Coloplast in the past. Perhaps I could use the Convex adapt ring along with my convex insert...hmmm? Let me know what you are using and I'll sample that too! Thanks for the info and I hope you get your skin issues sorted out :)

Now I'm the one with the late reply!

Since last posting, I ordered some samples from Coloplast and Covatec. I got the coloplast sensura xpro with light convexity in the mail yesterday, along with some barrier rings (though theirs haven't worked for me in the past) and some of the brava strips. The convexity looks a little deeper than the Convatec, and I have always liked the Coloplast pouches, so maybe they will work well. The Convatec samples should arrive today. The only reason I haven't tried their convex wafers before is because they only come with a tape edge, which irritates my skin. They are going to send a special barrier wipe that will hopefully alleviate that issue. Now I just have to figure out which to try first!

As for the irritation I get from Sure Seals and tape borders, it is not a fungal thing. I've had yeast/fungal infection under my wafer before, and it was quite different. When I use a Sure Seal the skin underneath it just gets very red, but not raised at all, and itchy. The irritation lasts for a couple days after I remove the Sure Seal. I'm guessing it's just a mild allergic type reaction, and the same thing happens with tape borders. Not unbearable, but certainly not ideal.

Hopefully I can figure something out....I'm tired of going to bed worrying about whether I'll wake up in the middle of the night with a mess and need to do a wafer change. But really, I haven't slept a whole night thru in over 2 and a half years...I'm lucky to get 3-4 hours at a time!